Livvy Gosney’s #JustTreatUs Story

Published On: 31 March 2021Categories: Blog, News

Covid has placed a huge strain on our NHS and led to delays of thousands of heart valve disease treatments. With an estimated 44,000 cardiac procedures lost already, and an increasing backlog, a group of untreated heart valve disease patients have come together with a simple message – Just Treat Us. Delaying treatment leads to worse outcomes, but with timely treatment patients can get back to a good, even better, quality of life.

This is Livvy’s #JustTreatUs story:

“I am a 47-year-old woman on the treatment path for a bicuspid aortic valve and an aortic aneurism. In the summer of last year, my cardiologist ran a series of tests and determined its time to transfer me to the large hospital that specialises in heart surgery.

I have had fantastic communication from my surgeons’ secretary informing me of the date my surgeon will see me and that he will do a preoperative assessment on the day, which will include full-bloods, chest x rays, Echocardiogram, meeting a specialist nurse and then meeting him to discuss my current heart health. Then he will make a decision if and when the operation will take place.

I don’t feel at the moment that Covid has affected the process too much. However, it is filling me with doubt about if the operation will take place – which is what I desperately want. My heart health has massively affected my life. At the moment, I am unable to drive due to medical conditions, unable to work as I’m on the CEV list and have been shielding since March, and I am also struggling with home life and looking after my daughter who Down’s syndrome.

Originally, they said originally they would treat me in 6 to 8 weeks, but that’s now 6 to 9 months at least. I am living a perfect storm, shielding with COVID, unable to look after my daughter properly, and then my breathlessness is getting so bad sometimes I can’t even walk to the car.

I am looking forward to, even excited about, my operation – which may sound odd, but when your life is so affected, and the impact is so huge, to see the light at the other end of the tunnel is something I cling to daily. People who have had open-heart surgery say waiting is the hardest part. Waiting and wondering through a pandemic is even worse as the uncertainty is hideous, its very hard to cope with mentally as you just can’t switch off.

Even when I am given my date, I will be sure if it will go ahead. If the ICU need beds for Covid, then I worry my treatment will wait. Of course, I understand this and, in fact, would not have it any other way. If someone is more in need than me, then I will happily step aside for them. But I also don’t want to get to a stage in my heart health that puts me in a worse position where things are more complicated. I would rather have it sorted now to give me the best chance of a good outcome. Then I can get back to work, back to my family and giving my daughter the care she needs.

At the moment, as it stands, if you were to look at it on paper, I am a bad mum. I can’t cope. But all you need to do is treat me and I’ll be a new shiny penny, and I can play with her, have a life with her, and give her the care and support she needs and deserves. But as it stands I need more help from social services to look after her.  It has just become a perfect storm. I want to survive, I want to get better, and I get back being a good mum.”

Click here to read the #JustTreatUs Patient Statement 

Wil's Blog - Meaningful Patient Involvement in Delivering Guidelines
All-Party Parliamentary Group for Heart Valve Disease First Oral Evidence Session

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